Chronic Fatigue Syndrome is an invisible and yet debilitating medical condition. On a personal note, I have lived with this condition for 14 years and still get the same blank look when I see a medical professional with regard to this as I did back when I first fell ill. While I know of no cure, the condition can be managed and that, along with a little understanding of the condition itself is what I hope to impart here. I will use the acronym CFS to describe the condition in this post.

Petition presentation: A Dedicated Support Team for Myalgic Encephalomyelitis (M.E.),Chronic Fatigue Syndrome & Fibromyalgia Sufferers in South East Wales

What is in a name?

This condition has many names, some call it ME which can mean Myalgic Encephalopathy or even Myalgic Encephalomyelitis, then there is CFS, standing for Chronic Fatigue Syndrome, or the professionals prefer PVFS, the acronym for Post-Viral Fatigue Syndrome and we also have CFIDS, Chronic Fatigue Immune Dysfunction Syndrome. The medical profession as yet does not have a single name for this condition, let alone an agreed-upon structured treatment regime for it. The fact that there is no medication or accepted treatment seems to have resulted in a distinct lack of interest from the General Practitioners of this world.

Symptoms

The symptoms of Chronic Fatigue Syndrome vary in intensity. They tend to intensify in response to activity, ranging from mild discomfort up to physical and intellectual collapse. The most important symptoms that medical professionals use for making a diagnosis of CFS are:

A Strong Reaction to Activity - the main way in which CFS diagnosed is the way in which symptoms worsen after activity, to a point beyond what the sufferer can tolerate. Such activity can be physical or mental (taking university finals put me in bed for a week) and almost always has a delayed impact, with the delay ranging from a few hours up to a couple of days. This is followed by a period of relative recovery which may last for days or even weeks. The amount of activity that provokes increased this is related to the severity of the collapse and so can be quite short lived and of modest intensity.

Muscle Fatigue - the ability to perform physical tasks is reduced drastically. Physical activity brings on fatigue far more quickly than could be expected. The sufferer still retains their physical strength (this will reduce over time through lack of exercise), but is unable to carry out tasks requiring physical exertion without a reaction.

Cognitive Dysfunction - often referred to as breaking fog, this symptom affects both short-term memory and raw cognitive ability. When I say raw cognitive ability, I mean, quite literally, the ability to think and communicate. In severe cases, reading becomes impossible and likewise decision-making or at its worst, even trying to understand what is being said becomes an incredibly difficult task. Person can frequently appear drunk with this group of symptoms: slurring words, finding it difficult and stressful to grasp the flow of even simple conversations to understand and unable to articulate even relatively simple concepts.

Pain - many people suffering from the CFS often have strange pains that can be persistent and unresponsive to pain control medication. The pain is often, but not always muscular, I have spoken with one sufferer who had chronic pain in her big toes and my own pain manifests in the palms of my hands and my thigh and calf muscles. The pain intensity is variable and a small, but significant minority of people have little or no pain.

Sleep Disturbance - for CFS sufferers, a good refreshing night sleep is something that happens to other people. This sleep disturbance will generally result in the person finding it difficult to drop off to sleep and then waking several times in the night.

Temperature Control - pain resulting from exposure to cold can be very severe to a person with CFS, this pain is akin to burning and can be quite severe. Temperature control in the other direction is also an issue, sweating and overheating, either general all localised are associated with the condition.

Flu-like Malaise - sufferers often report a general feeling of "being unwell", with additional symptoms like a sore throat, tender lymph glands and similar problems. In the 1980s, this gave the condition the popular and derogatory name of Yuppie Flu. There are other, lesser symptoms, but there is not the room here to describe all of the symptoms reported in conjunction with this illness.

Living with CFS

While it is unpleasant to suffer with this condition, it is by no means unmanageable. Managing CFS can be difficult and is most certainly frustrating at times, but it can be done, there is a way to make a workable life for yourself. The first and most important thing to understand about CFS is that if you try to fight it, you are fighting against your own body and you cannot beat your own body in a straight fight. Trying to fight CFS will result in the eventual collapse that you suffer being far more severe than it needs to be. It is important to live as stress free life as possible, stress will exacerbate this condition and maintaining even emotions is an important factor in coping with this condition. The way to get by with CFS is to deal with problems and tasks in manageable chunks, and sometimes, when the need is great, put aside time (yes, days and weeks) to recover if you know you are going have to do something that will cause you to collapse.

Examples of this that I have experienced things like:

Cleaning - clean up in small steps and be prepared to take regular rests.

Cooking - be ready to prepare food and then rest before going on to cook a meal.

Building Work - be sure to have a space very nearby where you can relax in a recumbent or prone position and do the work in small manageable parts, resting in between. Done this way, the work will take longer and be frustrating, but it is quite possible to get work done in small, 20 minutes to half an hour sessions. Attempting to do reasonably sized job in one session will result in the work not getting done and at least several days recovering from the physical collapse that is bound to follow.

Driving - if you have to travel for any distance, don't do it alone! Know your own body and don't even think of driving if you are not up to it.

Exams - for a typical, 3 hour, university exam, be prepared to spend up to a week recovering. Some people will require this exam to be split over two days.

A person with CFS can still function, provided that they are prepared to firstly, make the additional preparations in order to take into account the condition and secondly, in cases where severe exertion, physical or mental, is required, be ready for, and prepared to pay the price for, that exertion with the collapse that is sure to follow. How bad can things be if you just decide to fight and work through it? The last time I did this, and I did know better at the time, but I just felt the responsibility and couldn't let my students down, I spent just under a month in bed and a further two weeks getting myself fit enough to take up my duties again: so yes, it can be fairly severe.

The person suffering with Chronic Fatigue Syndrome will often, in time, recover to some extent. Managing the condition and especially not expecting too much will help in the meantime. It can be a truly emotionally draining condition to suffer from, it is particularly difficult in that the person with the condition looks perfectly fine for the most part, it is only when the collapse occurs that the real horror of the condition becomes visible to others.

Useful Links

M.E Association - Great Britain

National Alliance for Myalgic Encephalomyelitis - USA

Solve M.E. Initiative - USA

PANDORA - USA

European M.E. Alliance - Europe Wide